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Campaign or mutual support
Posted: Thu 25 Mar 2004 1:50 pm
by Andrew MacLean
I'm wondering whether the KC group could raise its profile as a campaigning group, or whether the needs of Keratoconus sufferers around the Uk could do with the support of a campaigning group like the RNIB?
Certainly it seems extremely unsatisfactory that so many people with KC seem not to be well supported by the NHS, while folk like myself who live in the general orbit of major teaching hospitals with dedicated cornea clinics enjoy a world class service.
Campaign or mutual support
Posted: Thu 25 Mar 2004 10:22 pm
by Helen Scholar
How about a 'keratoconus awareness' week? I'm sure most people have never heard of this condition; I certainly hadn't before my son was diagnosed. I didn't know that it was the reason for most of the corneal grafts that take place in the UK (which I read somewhere - probably here!), or appreciate the fact that problems with lenses can mean people have periods when their vision is (temporarily) very poor indeed. Perhaps raising awareness would be of benefit when people with KC need support in education or the workplace?
Posted: Fri 26 Mar 2004 9:43 am
by Andrew MacLean
Helen
An excellent idea. It would be good tor aise the profile of the condition in schools, GP practices, colleges and Universities, as well as in the general public.
andrew
Posted: Sat 27 Mar 2004 11:22 am
by Anna Mason
It is only over the last 10 years that I discovered that other people have it I used to think it was only a few of us.
Campaign or mutual support
Posted: Sat 27 Mar 2004 12:33 pm
by Andrew MacLean
To be honest, Anna, that's why I think this site is such a wonderful place.
If we have nudged along imagining that we were alone, or at least part of a small and probably insignificant section of the population, then how can we expect the general public, GP's or even opticians to have any idea of the particular circumstances with which we live?
When we had our recent Scottish group meeting, some folk who had lived with this condition for over twenty years were meeting for the first time other people with the same condition.
I have visited the RNIB site on a number of occasions and they have nothing on Kertoconus. Maybe the first step is to get them to recognize that KC is a not uncommon condition that leads to serious loss of sight and in some cases leaves people legally blind in one or both eyes.
Andrew
Posted: Sat 27 Mar 2004 3:19 pm
by sajeev nadarajan
Hi Everybody,
I agree with you all 100%. If we don't do it knowone else will !